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Is Your Philanthropy 'Autism Aware'?

April 02, 2014

(Peter Berns is chief executive officer of The Arc, the largest community-based organization advocating for and serving people with intellectual and developmental disabilities and their families in the nation.)

Headshot_peter_bernsOver the last six years, the Centers for Disease Control and Prevention has updated its estimate on the number of kids in the United States with Autism Spectrum Disorder ("ASD" or "autism") from 1 in 125 in 2008, to 1 in 88 in 2012, to 1 in 68 today. That's a staggering increase.

Children, youth, and adults with autism, as well as those with other developmental disabilities, are part of the fabric of society. They attend the preschools and kindergartens that many of you are working to improve and can be found among the ranks of students striving to succeed in school and go to college. You'll find them among the unemployed struggling to find a job, among patients with chronic conditions searching for adequate care, and among the homeless. Many of them are active in the visual and performing arts or enriching society through their scholarship, activism, and community service. Their family members and friends are everywhere you look. They are not going away, nor should they.

Autism is part of the human condition; it permeates every aspect of our communities because it is a fact of life. Which is why, regardless of grantmaking priorities, foundations and philanthropists must be autism aware and do more to incorporate a "disability dimension" into their work.

Think about it. Is it really possible to affect the "school-to-prison pipeline" without taking into account what's happening in the special education system or statistics recently released by the U.S. Department of Education’s Office of Civil Rights which show that students with disabilities experience higher rates of discipline, suspension, and involvement with law enforcement than students without disabilities? Is it really possible to effectively address domestic and sexual violence if you don't know that people with intellectual and developmental disabilities (I/DD) experience such violence at a much higher rate – three times as high for women with disabilities, and twice as high for men with disabilities – than the general population? Is it really possible to address chronic unemployment without considering that people with autism and other I/DD experience much higher rates of unemployment – as high as 80 percent – and need much more in the way of supports and interventions in order to secure gainful employment?

Simply put, if your philanthropic work doesn’t include a disability dimension, it's possible you'll make progress toward your objectives, but you will never fully succeed in achieving them.

The Arc, the nation's largest community-based organization for people with I/DD, serves and advocates alongside thousands of people on the autism spectrum. Our nearly seven hundred chapters in forty-nine states are on the frontlines, providing programs, services, and supports for people with autism and advocating for public policies that meet their needs.

Over the past six decades, we have learned that critical societal problems that affect people in the general population also affect people with autism and other developmental disabilities and their families – often disproportionately. But while the problems frequently are the same, the solutions for people with autism and other developmental disabilities tend to be unique. Take, for example, the problems of underemployment and unemployment. Most workforce development programs simply are not equipped to serve people with autism, despite the fact that rates of unemployment are much higher in the autism community. Yet workforce programs can be designed to successfully serve people with autism.

Earlier this year, The Arc announced a new partnership with Specialisterne, a Danish nonprofit, to replicate its model for recruiting, assessing, training, placing, and supporting people with autism in jobs in the U.S. tech industry. Specialisterne creates meaningful employment opportunities for people with autism by building relationships with technology companies that need employees whose skill sets match up with specific traits – a passion for detail, the ability to manage repetitive tasks, innovative thinking, and long-term loyalty to a job and employer – that many people on the autism spectrum possess. Chapters of The Arc are working with Specialisterne to serve tech companies such as SAP and CAI that are eager to employ people with autism as software testers, programmers, data quality assurance specialists, and in other positions. 

Or take the problem of the school-to-prison pipeline. Most programs that seek to address this complicated issue do not factor in a disability rights perspective. And yet, youth with autism, Fetal Alcohol Spectrum Disorders, or other I/DD are consistently overrepresented in school disciplinary statistics, the juvenile justice system, and the adult correctional system. To address the problem, The Arc launched a new National Center on Criminal Justice and Disability in 2013 to examine how people with disabilities are accommodated in these systems.

April is National Autism Awareness Month, and we hope all philanthropists and philanthropy professionals will explore, over the next thirty days, the disability dimension of their work. Our Autism NOW: National Autism Resource and Information Center is a great place to start. Autism NOW will help you cut through the clutter online and provides a variety of resources, all of which have been vetted by people with autism.

Ultimately, those who work in philanthropy can have an even greater impact on important social problems by making sure the work they support reaches people with autism and other intellectual and developmental disabilities, and by incorporating people with autism and development disabilities into their organizations and as valued community partners. After all, April will give way to May, but autism is here to stay.

– Peter Berns

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Posted by Dena Gassner  |   April 03, 2014 at 09:28 AM

Excellent post, Peter.
So appreciated!

Posted by Dana Hall  |   April 17, 2014 at 02:56 PM

Hello Peter,
I am the mother of a child with autism. He developed autism at 16 months after a vaccine reaction. It is my understanding that the ARC does not advocate for those who have been vaccine injured to increase the safety of the vaccines or insure that those injured receive the justice they deserve from the manufacturer of the vaccine. Could you please take a look at the following article and then explain why the arc does not believe that children are being injured by vaccines? Thank You, Dana Hall
Congressman Posey: ...................... You know, as I see it the CDC view seems to have been as long as Thorson was cooking the books to produce the results they wanted, they didn't care whether the studies were valid or how much money was being siphoned off the top. They just, obviously, did not bother to look. It's like the Securities and Exchange Committees and Bernie Madoff, but it's worse because we are talking about somebody who basically stole money that was supposed to be used to improve the health and safety of our most vulnerable in our society, you know, our young babies."

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